Stop Screaming at Yourself Over an A1C

ScreamingSomeday it will dawn on people, and I’m not sure when or how, that the blood glucose numbers one deals with are not numbers of judgment and if you allow them to be….well then you will have to deal with them.
“OMG….what a horrible number.”
“How did I let that A1C get so high…what kind of parent am I?”
“Just got a bad report, her A1C was 9.0……bot did I get an earful.”

Seriously?

Hear me and hear me loudly——there is a huge difference between a gauge and a report card.  We always and in all ways looked at A1C and other diabetes’ numbers as gauges to help us rectify whatever situation we were in.  We never got worked up about the numbers and I see no reason why that should change especially if there is such an incredible effort to do one’s best.

When an A1C number is high, figure out why it is, and adjust accordingly.  Not with a self-lashing or belittled approach by anyone else (including your Doc).  The number is 9.0 and that seems a bit high.  Why is it high?  What do we need to do to lower it?  Is there anything that can be done differently to lower it?

Nothing more……..nothing less.  A gauge.  Correct and move on.  Period.
’nuff said.
I am a DiabetesDad.
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NEWSBREAK: CBS This Morning Reports on Insulin Costs, The Players, and the Lawsuit

CBS This MorningAs I wrote/reported recently on the story in Diabetes Daily, there is a lawsuit pending against the insulin companies regarding collusion on insulin pricing of late; and I also have stressed on how all parties need to react and must come together (read it here).  Today, on CBS This Morning, they report the story in more detail.

What I would like to stress about this story, is as I have also stated countless times, it is touched upon here in this report but do not just gloss over it.  At the end of the report, the reporters discuss how much finger-pointing there is going around—-THIS IS SO CRUCIAL because the finger-pointing will continue as long as ALL OF THE PLAYERS ARE NOT SITTING AT THE SAME TABLE AT THE SAME TIME to fix this problem.

It also will not matter what national health plan is in place, and do not be led off the path of what is important:  ALL PLAYERS MUST COME TOGETHER OR WE WILL BE IN A PERPETUAL, AND UNENDING, CIRCLE FOR YEARS TO COME.

THIS IS WHAT WE MUST ASK OF ALL THE PLAYERS……TO COME TOGETHER.

Here is the story on CBS This Morning.

I am a DiabetesDad.
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A Year from Today I will Give her Away………But I Wonder One Thing……………….

kaitlyn-jobExactly one year from today I will do something and it will be the only time I will ever do it in my life.  I will walk my daughter to the front of where those closest to us will have gathered and I will shake a young man’s hand, and I will put her arm in his…..and I will take my seat, next to her mother.

And she will be married.

The one-year countdown begins today.

I probably won’t write about that often but lately, I have thought about it a lot.  If you know anything about the journey we have been on, it started when fate/life through us one nasty, nasty curveball.  At the age of 2 (2 years, 5 months and 21 days to be exact, but who was counting) she would be diagnosed with type 1 diabetes.

Our lives were shattered.

Our lives would never be the same.

Of these two statements, the first one, we decided, would be short-lived.  There was no room for ‘shattered’ in our lives.  We did not have the time, and we certainly did not have the energy, to live life as if we were a shattered pane of glass.  Shattered is just too hard to put back together again.  So we chose work over giving up or giving-in.  We chose that—-all of us; being the ‘we’.  As a family.  As one unit.  As a drive to never lay down to this disease.  We would do it together.  It would knock us….but we would move on, and move on stronger.  We would try never to stop.

And we never did.

There were so many things ahead to do in this ‘daddy’ thing.

There was silliness needed when tears came along; there was strength needed when fear came along; there were feet to stand upon when dancing was in order; there were daddy-daughter dances to go when the time was right; there were dance nights to attend when the recitals were due; there were accolades to attend when the merits were earned; there were 50 cents to give when deli pickles were bought; there were two-wheelers to do when the training wheels were off; there were Santa Claus and Easter Bunny pictures to take when the season was right; there were butterfly kisses to give and night-time prayers; there were butterfly kisses and a good night song.  There was just too much to do.

A year from today she will be walked down the aisle. We have been through a lot and we have walked together through many things her and me.  A real lot together, all of us.  And we will walk down the aisle together.  I will shake his hand and place her hand in his.  He’s a good man.  He’s a strong man.   A tear rolls down my cheek as I ask myself on this day, one year prior to her becoming his wife:  is it still okay if she always remains my little girl?
I am a DiabetesDad.
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Don’t Let Diabetes WAG You!

dog wagMany times I am asked, “What’s the best way to handle this disease?”  Now many people will tell you that there is no wrong way or right way, but I disagree.  Sometimes I turn my head and cringe when I read things because I really do not engage in FB banter……about anything.

There seems to be, sometimes, this feeling that anything goes in the world of diabetes. If it works for my child then that makes it okay.
Now…….just hold on a minute.
I’m a firm believer in doing what is right, and I’m a firm believer in doing what works for your child.  My caution is what you base your decisions upon when you choose an approach to this disease.  If you do your due diligence in finding out as much as you can about a particular aspect of this disease; how to manage it, how to handle it…….then more power to you,

But know this—-you can not ‘skate’ with this disease.  It DOES NOT CARE what you ‘THINK’ you should do, it knows what it does.  Have you ever heard the phrase ‘WAG’ with your kids and their blood glucose levels?  Excuse my french but WAG means Wild Ass Guess.  Kids will just give a WAG when you ask…….the problem is that more and more, I am seeing people’s approach to this disease as a WAG.

YOU CANNOT AFFORD TO GUESS.

YOU MUST FIND OUT.

I can share story upon story about people who REALLY knew what they were doing and ended up with not the best results.  If you are not at your best when it comes to knowledge,  you might get along for a while but your child will pay the price.   Each issue should be dealt with as soon as feasible.  If you think you need to know more……find out.  Read.  Ask questions.  Ask more questions.  Things with t1d do not ‘just get better’ they get better because you work at it.  They get better because you learn.

They get better because you act.

So, no; I’m not going to tell you what you should do with YOUR child.  But I am going to tell you that I have learned that there are many, many, many parents waiting to help you, but you have to ask.  Learn what there is to know and keep learning.   Know.  Don’t let diabetes WAG the patient.  Knowledge is the equalizer….never forget that point.

I am a DiabetesDad.
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There Comes a Time When One Must Speak Out

UnderwearThere comes a time when one just cannot take it anymore.  The struggle to figure out which way the world is front, and which is back.  So many people stating which is the right way, which is the wrong way, and of course a whole bunch of people not talking at all.

I’m talking, of course, of the labels on our underwear.
Or as we used to say in the show, “My underwears”.

It used to be so simple.  The label went on the inside on the back.  Done.  No problem.
Not anymore.  Labels are on the side, the middle, the inside, the outside, the inside and the outside…..a fella just cannot tell anymore if they are on perfectly.  By the way, some women tell me they have it even worse……..but let one of them write about that dilemma, I have enough on my own.

I get it, it should be obvious, well it isn’t……not anymore.  The other day I put on my leopard……well….okay….they were Navy Blue….and the label was inside, outside…..just too difficult nowadays to figure out how to even get dressed in the morning.
I have better things to do with my time, thank you; like read the morning news.
Come to think of it, lately, those labels seem to be confusing many people as well.   I’ll stick with my own underwears, thank you.

I am a DiabetesDad.
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NEWSBREAK: Law Suit Against Top 3 Insulin Manufacturers

scales-justice-statueI won’t even try to re-report this story—-go to my colleagues’ story at Diabetes Daily and read all about it:
https://www.diabetesdaily.com/blog/people-with-diabetes-are-suing-the-top-3-insulin-makers-349851/

I am a DiabetesDad.
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OPINION: If All Do Not Sit at the Table, at the Same Time, NOTHING will Get Done.

TableI received my mortgage bill recently from my bank.  There was an error in my amount of taxes.   So I called my municipal tax assessor’s office to confirm the error and they agreed.  I called my bank and informed them, they started a report (they always ‘start’ a report) and said they would look into it.  I called back in a few days and they stated they contacted the tax assessor’s office and that they were correct from the beginning and that I would be getting a letter…..from the report.

Uhhhhhhhmmmmm……I don’t think so.

After going around in a circle a few times, I got both the bank and the municipality on the call at the same time to stop the perpetual merry-go-round and we worked it through.  I will be getting the revised bill shortly.  Now those few sentences are about 6 hours worth of wasted time and energy, but when I got everyone together, at the table at the same time, as-it-were…..results.  Unless all the stakeholders are together at the same time it’s the gerbil in the never-ending spinning wheel.

Now hear me and hear me closely.  All of the government regulations, petitions, and meetings will not do anything substantial when it comes to the cost of insulin. Little will be done in tangible results.  At some point, the natural progression of the market and competition will do something to lower the costs and people will be jumping through hoops to take the credit….if that, indeed, ever happens.

Oh sure MANY, MANY really good things will happen that will REALLY, REALLY look good…..but it’s all for show to say to the world……”look what we did.”

But watch carefully….it’s all for naught.

But until such time as the stakeholders, the retailers, the producers, the manufacturers, all sit around the table at the same time to try to resolve this mess….and throw in a few elected officials to give a government perspective on the whole picture as well………..it won’t be resolved…….ever.  Please prove me wrong.  But if we want to see something significant happen with this insulin dilemma, get everyone involved at the same time at the same table and lock the door until a resolution comes into play….is really our only chance.

So either get everyone, EVERYONE, all together or, as I said, prove me wrong……..PLEASE…….prove me wrong.
I am a DiabetesDad.
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NEWSBREAK: No One was Better for Diabetes Causes than Mary….RIP

MaryI wish I could say I was a friend of Mary Tyler Moore’s, she surely made you feel that way.  There was a time when she, or her beloved husband Robert, and I would pass and a ‘hello’ was stated.  We knew of each other in the same battle.  She wrote a wonderful inscription in her book when she sent it to me to thank me on a specific project we worked on together and I will cherish it forever.

She THANKED me. Really?  Like I could ever be on par with what she had done over the years.  We worked together on fundraising, Washington DC advocating, and when it came to ANYTHING diabetes…..rest assured Mary was there in full force……how lucky was I to have just a little piece of life with this incredible woman.

It’s not often one gets to work with an icon, with a person who has her character-genetic pool somewhere in almost every comedic character to appear on TV—she was not the best—she was the best of the best and she did it—-while battling diabetes.

I have stated it before, and will always feel the same, no one in the celebrity world came close to do for the world of diabetes than what Mary Tyler Moore accomplished with JDRF.  Her efforts were tireless over the years.  She would attend events, meet with elected officials, testify before congress and yet, it was when she met those who lived like her….with diabetes, that I will remember most.  The time she took to speak to them and relate to them, to tell them they would be okay…..that is the Mary I will remember most.

Every organization under the sun wishes they had a spokesperson the caliber of Mary Tyler Moore.  Her connection with JDRF (and what was then JDF) was, and is, legendary.  She loved the JDRF and the people involved with the organization.  How fortunate they are, and were, to have Mary as part of their family.   My heart goes out to the many who worked with her at the JDRF, especially Karen Brownlee, who worked with Mary for years as the Liaison between the JDRF and Mary’s ‘people’.

Mary had but one goal when it came to diabetes….to bring to the attention of the world the battle of diabetes and how important it is to one day cure it.  How important it is to handle it.  Perhaps if she meant something to you, you can give a donation to JDRF in her memory (or to YOUR favorite organization). Mary would want it done that way.  I did.  It’s the least I could do for the woman who taught me to fight diabetes with as much fierceness as possible and at the same time; try to turn the world on with a smile…..which no one did better than Mary Tyler Moore

Rest in Peace friend, and thank you.
I am a DiabetesDad.
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Are You Marching on Saturday???…Some Caution; I Care-Come Back Safely

womens marchI care about you and do not want you hurt in any way—-so I offer the following if you plan on utilizing your right to peaceful assembly this weekend–share with others.

If you are marching on Saturday in Washington DC or in one of the other cities, I share this with you.  In addition to trusting no one you don’t know (that means sharing any information or lending your phone for even a second), staying to the outside of the line, wearing comfortable shoes, staying hydrated, when you see a bathroom-use a bathroom, confronting no one, and buddy system, buddy system, buddy system—- and remembering that not everyone around you is there for the same reason you are.

Also—-electronically—-very useful information is below (I have not created this—it is out there–I’m just sharing because it makes sense):

1. Enable full-disk encryption on your device
Full-disk encryption ensures that the files across your entire device are encrypted. This is a form of encryption that protects data at rest, as compared to in-transit encryption, which protects data that is transferred over the Internet. Full-disk encryption protects everything from your local database of text messages to the passwords you have stored in your browser. This is useful in case your device is confiscated by police, but also protects you in situations where the device is lost or stolen. Protest situations are often unpredictable, so losing your phone is a distinct possibility.

2. Remove fingerprint unlock
In the past, iOS and Android used the same password to both boot your phone and to unlock it. Recently, both iOS and Android introduced a mechanism to allow you to unlock your device with your fingerprint. This is a convenient way to ensure that you enjoy the benefits of full-disk encryption without sacrificing convenience. However, in protest situations we suggest you turn this functionality off. A police officer can physically force you to unlock your device with your fingerprint. And as a legal matter, while the state of the law is in flux, there is currently less protection against compelled fingerprint unlocking than compelled password disclosure. You can always add your fingerprint back to the device after you’ve left the protest.

In iOS, you can disable this by going into Settings -> Touch ID & Passcode and removing each of the fingerprints in this menu.

In Android, disabling this feature may depend on your device manufacturer. For Nexus devices, go into Settings -> Security -> Nexus Imprint and delete the fingerprints from this menu.

3. Take photos and videos without unlocking your device
Catching that perfect shot is something you want to be ready for, and powerful images can help bolster the cause. If you’ve chosen a strong password, entering it into the device takes precious time, and you risk the moment passing before you’re able to take the shot. Luckily, newer versions of iOS and Android allow you to take photos and videos without unlocking your device, giving you the time to capture the moment.

With Android Nexus devices, double-press the power button.

At the iOS lock screen, you can swipe to the left.

4.Install Signal
Signal is an app available on both iOS and Android that offers strong encryption to protect both text messages and voice calls. This type of protection is called end-to-end encryption, which secures your communications in transit (as discussed in tip #1). Other apps, such as WhatsApp, have implemented underlying cryptography. But we believe Signal is the better option because it implements best practices for secure messaging.

In addition to encrypting one-to-one communication, Signal enables encrypted group chats. The app also recently added the functionality of having messages disappear anywhere from 10 seconds to a week after they are first read. In contrast to some other services like SnapChat, these ephemeral messages will never be stored on any server, and are removed from your device after disappearing.

Recently, a grand jury in the Eastern District of Virginia issued a subpoena to Open Whisper Systems, the maintainers of Signal. Because of the architecture of Signal, which limits the user metadata stored on the company’s servers, the only data they were able to provide was “the date and time a user registered with Signal and the last date of a user’s connectivity to the Signal service.”

5. Use a prepaid, disposable phone
If you’re really concerned about the data stored on your device, don’t bring it at all and pick up a prepaid mobile phone. These lower-end devices can be purchased along with a SIM card at most large retail stores, and current federal regulation does not require you to show your ID (but your state may). Let your friends know your temporary number, and use this to coordinate activities. Remember that the location of mobile devices can be determined by the cell towers they connect to, so if you don’t want your identity known, turn off your prepaid device before going home or anywhere that might lead to your identity. Using GPS should be safe, since GPS is a receiver and does not transmit any information, but your device may store your coordinates. For this reason, we suggest you turn off location services. When you’re done with the phone, it can be safely recycled or discarded from a location that is not linked to you. Keep in mind that if you carry both your regular device and a prepaid one with you, the location of these devices can be correlated as a way to compromise your anonymity.

6. Back up your data
Take precautions to limit the possible costs that can be incurred by the loss of a device. Backing up your data regularly and storing that backup in a safe place can save you a headache later on.

7. Consider biking or walking to the protest
Automated License Plate Reader Systems (ALPRs) automatically record the license plates of cars driving through an area, along with the exact time, date, and location they were encountered. This technology is often used by law enforcement, or employed by private companies such as Vigilant and MVTrac who then share license plate data with law enforcement and other entities. Amassed in huge databases, this data is retained for an unknown period of time. These companies have lobbied and litigated vigorously against statutes that would ban the private collection of license plate data or otherwise regulate ALPRs. Effectively, your location can be tracked over time by your driving habits, with very few legal limits in place as to how this data can be collected and accessed.

Consider using alternative means of transportation if you would prefer that your movements and associations remain private.

8. Enable airplane mode
Airplane mode ensures that your device will not be transmitting for the duration of your time at the protest, and prevents your location from being tracked. Unfortunately, this also means that you won’t be able to message or call your friends, so plan accordingly. You may want to select a nearby meet-up spot where you and your friends can rendez-vous if you get separated. You may also want to turn off location services (as discussed in tip #6).

9. Consider alternatives to Facebook and Twitter
Facebook and Twitter provide a large user base for you to promote your cause, but these popular social media platforms also carry risks. Viewing an event page, commenting on the event, and stating your intention to attend are all actions viewable by law enforcement if the pages and posts are public, and sometimes even if the pages aren’t (subject to a court order). For actions that require a more cautious approach, consider forming a group chat via Signal as described above.

I know this is not diabetes, but many people I care about will be ‘doing their thing’ and letting their voice be heard, so I thought this information might be useful.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’